The House justified its inclusion of disabled children under age 18 under aid to the disabled, if it is to their advantage, rather than under the program for families with children, on the grounds that their needs are often greater than those of non-disabled children. The needs of disabled children however, are generally greater only in the area of health care expenses. In all but the two States that do not have Medicaid programs, children now eligible for cash assistance are covered under existing State medical assistance programs. Disabled children’s needs for food, clothing and shelter are usually no greater than the needs of non-disabled children.1

For an adult, the definition of disability was the same under the SSI program as it was for SSDI: [The] inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.3For a child, an individual under age 18, eligibility was based on having a disability of comparable severity to that of an adult, defined as older than 18. While the evaluation for adults involved a 5 step sequential evaluation4 which included an analysis of their functional ability, the evaluation stopped at step three for children, meaning if they did not have an impairment severe enough to meet a listing, they were not found to be disabled.

Subsequently, Congress directed the Secretary of Health and Human Services to create eligibility standards that would establish disabling impairments in children that were of “comparable severity” to a disabling impairment in an adult. The agency began working on a listing of medical impairments that were unique to children but by 1976 the listings had not been published. The agency was criticized by Congress for delays in publishing the impairments which were necessary regulatory guidance for the State agencies. During floor debate in the Senate in 1976,5 one Senator noted:

Of particular concern is the current status of children in this [SSI] program. It has been 4 years since the Congress enacted the SSI program, and there are still no adequate guidelines which would enable State agencies to determine how to apply the program to children. Individual States, receiving no direction from the Federal Government, have been adopting their own widely varying guidelines.6

In the years that followed implementation of the SSI program, the evaluation of disability cases became the subject of litigation in the courts. In the City of New York v. Heckler,7 the Second Court of Appeals upheld the district court finding that SSA used an improper standard in evaluating the impairments of young workers with mental illness. After a series of hearings Congress responded by requiring SSA to rewrite the listings of mental disorders within 120 days.8 The House Report noted that serious questions had been raised about the old listings, observing that even "the Secretary has determined that a full scale re-evaluation of the Listings and current procedures is necessary. . .”9 The agency complied and issued new listings for analyzing mental disorders in adults.10 However, the children’s listing for mental disorders remained the same for almost six years, despite the similarity in the analysis between the adult’s and children’s listings for mental disorders.

That same month, the Supreme Court issued its seminal decision in Sullivan v. Zebley.11 The case challenged the comparable severity analysis used in children’s claims. The court held that a disability analysis based solely on the medical listings was inconsistent with the statutory standard of comparable severity because there was no individualized functional analysis as contemplated by the statute and applied to the analysis in adult disability cases. The decision prompted new regulations, increased outreach efforts, and the review of thousands of prior decisions in children cases.

To comply with Zebley, SSA was required to reopen denials in children’s SSI disability cases back to 1980. SSA estimated that the workload would include re-adjudicating about 550,000 claims, along with an ongoing workload of approximately 35,000 additional cases per year.12

an Individualized Functional Assessment for evaluating a child's impairment beyond the medical listings to parallel the vocational steps applied in adult cases and to satisfy the "comparable severity" criterion14

While much of the attention has focused on the Sullivan v. Zebley Supreme Court decision as the cause of this growth, our analysis shows a more complicated picture. Although the new functional assessment process established by Zebley added 87,900 children to the disability rolls through 1992 who previously would have been denied benefits, this new process only accounts for about 30 percent of all awards made since it was implemented. In contrast, 70 percent of all awards went to children whose impairments were severe enough to qualify on the basis of SSA's medical standards alone, without the need for a functional assessment. Thus, most of the children who received new awards would have qualified for them even without the functional assessment process mandated by the Zebley decision.16

GAO did find that the revised and expanded medical standards for childhood mental impairments accounted for much of the growth in the program. Awards based on the mental impairments (primarily mental retardation) almost tripled while awards for children with physical impairments was nearly double during the same time period.17

During this period, there were numerous news reports, both in local and national press about children being coached by parents to misbehave in order to qualify for SSI.18 ABC’s Primetime Live aired an examination of the SSI program which featured a former SSA doctor who claimed that less than thirty percent of children on SSI really deserved benefits although no supporting evidence was provided for her claim.19

Because coaching is difficult to detect, the extent of coaching cannot be measured with much confidence. In recent studies, SSA and the HHS IG reviewed case files and identified scant evidence of coaching or malingering. In the rare instances where they found evidence of possible coaching or malingering, most of the claimants had been denied benefits anyway.20

In March 1996, GAO again considered the allegations of coaching by parents, and examined cases from two initiatives conducted by SSA to identify cases of possible parental coaching. GAO found21:

To date this new definition has withstood court challenges. However, a similar round of media reports of abuse and families “gaming the system” has cropped up.23 There has also been concern about the growth of the children’s disability program,24 and the increased number of children receiving SSI benefits due to mental impairments, which comprise a growing majority of all child beneficiaries.25

Several studies have documented the correlation between poverty and disability.26 Children in low-income families that live in poor areas face heightened environmental risks. Those environments, including choices and constraints induced by poverty, may result in low birth weight due to poor nutrition during pregnancy and less access to health care which could result in the development of serious disabilities and consequently increased applications for SSI disability benefits.

The historical record of the program suggests that changes in its laws and in the standards governing SSI disability adjudications were motivated by public opinion as reflected in media reports and court decisions in cases that challenged prior decisions. Much of the history of this program has been a reaction to news reports which often contain unsubstantiated anecdotes,29 court decisions and congressional mandates. It is important that the decisions we make are factually based. Rather than simply developing streamlined processes for the efficient adjudication of the claims, we first need to define the mission for this particular program; a program that is supposed to serve children with disabilities, who live in poverty and are reliant on others to provide voice to their concerns and to care for their needs.

Social Security Bulletin, Vol. 70 No. 3, 2010, by Carolyn Puckett, Administering Social Security: Challenges yesterday and Today – 1990s, Complying with Sullivan v. Zebleyhttp://www.ssa.gov/policy/docs/ssb/v70n3/v70n3p27.html- SSA worked with 150 national organizations to reach approximately 450,000 children whose claims might be affected by the court decision. The agency also placed more than 125,000 posters in English and Spanish in offices of State and local government agencies and nonprofit organizations that provided services to disabled children.